Nevaeh Ennis

Family to celebrate with

Posted January 2, 2019

Christmas was so amazing with our family, with everything that has been going on this year it was so nice to have a few family members over and enjoy the holiday together. So many people gave gifts to our girls and we all felt the love, sweet and kind gestures that were given to us. Of course last year Nevaeh was only 2 months old so this was her first “interactive” Christmas. She did so amazing, her fine motor skills are getting better and BETTER. So watching her unwrap gifts was such a treat for all of us. Not only is she now completely off of ventilator support, but she is also picking up eating a lot better! Her surgery to remove the access tissue that had built up in her airway went as planned on the 26th of December. Of course both Leelan and I were a nervous reck going in, because anything could happen but we are always praying for the best. Her doctor finished her procedure with in 30 minutes. He explained to us why the procedure went so quickly. We couldn’t believe it! But there was NO granulation tissue (access tissue) in her airway! THANK GOD! What music to our ears! Because we have battled before with granulation tissue and it can come back. There was some tissue OUTSIDE of her trach stoma that had some granulation tissue, but if its on the outside the only medical intervention needed is to laser it off or use silver nitrate ( see "OCH Stay” blog ) which the doctor took it off with a laser and we will be tending to it as a wound for the next few weeks. But with it being on the outside it is easier to get rid of. As her doctor went on to tell us that what was in her airway was actually inflammation from being intubated for so long. But the best part is that inflammation is it can go down! So to help the process she will be going back in a month for a follow up. But these are steps to getting closer to decanulated! When we finally got to go in the recovery room to see her it was hard to see the constant suctioning of blood from the procedure. All of her vital signs looked great. So the next thing they wanted before they could let her go was to let her wake up from the anesthesia. So Leelan started to play some music that she likes. And with in an hour she woke right up and started dancing and clapping for her self! So we were able to leave 30 minutes after she woke up. We got home by 1pm and Nevaeh slept and only woke up a couple of times until the next morning, because the anesthesia was still wearing off. It took 2 and a half days until she was not showing signs of being overly tired. After signs of sleepiness from the anesthesia wore off Nevaeh had a couple of days on crying in pain. All we could do was give her Tylenol. But by the 4th day she was back to her normal playful self and her trach stoma started to look a lot better. She will has a follow up her her ENT specialist in just a few weeks to try her speaking valve again and see if we need to schedule another visit to administer steroids in office.

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